June 11, 2012

Bubble baby.

Next month I will have been in this Y.A.N.A Appartment a year. I will have been in Vancouver for a year and a half and on the the 16th the girls will be 14 months old.
Hannah is doing great! They have finally got her blood gas/co2 at a good number(40). They don't need to give her extra oxygen before they suction her and they aren't needing to suction her half the amount that they were. The main RT said she was really happy with Hannah's improvements and the only thing she would like to see before she goes home is to come off on oxygen but if it's going to take a long time that's somthing we could work on at home. She is on 25% right now and room air is 21% so it's not to far away.
Me and my mom will both be fully trained on trachs in two weeks! All that is left is changing the trach it's self. Next Monday we will watch it get changed and the Monday after I will do it. After we learn trach changes and get the stroller adjusted to hold all Hannah's medical equipment we can talk her on walks!!

If only...

So after hearing what I just shared it would sound like Hannah's close to going home and she's doing wonderful. Wrong. Apparently Hannah's main doctor wants to make her a effing bubble baby.
The doctor wants to get me and my mom trained and send us to Vic for a couple months. She was very firm on not letting us go home. She thinks if Hannah comes home she will get sick and her lungs will never get better so she isn't planning to let us go home. Well, she can get sick in the hospital there's always something floating around;
meningitis, RSV, whooping cough, mono. Last year in the NICU there was a measles outbreak. They don't know I cant keep Hannah from getting sick. We would Probably see less people at home then we do when we are in Vancouver.
The doctor also does not want to send us home because of where we live. If we got sick we aren't in Vancouver or Victoria. No, but we are a 15 minute plan ride and a 3 hour drive. That's pretty good. It's unfair for her to say we can't go home because they don't want Hannah to get sick but yet if we lived in Vancouver it would be fine.
On top of the doctor being adamant on us practically never going home I tried to talk to her about not sending us to Victoria for long. I had originally Suggesting sending us to Vic but just for a QUICK visit before home. Vancouver is basically my home I have been here for a year and a half hailey has a baby sitter, I have my "own" space here, I have Beth my family preservation worker that helps me out ALOT!! She can get me extra baby sitting checks up on me. She's a big support. I also would rather Hannah be in children's because they have such great programs that are really helping her developmentally.
When I brought up that I did not want to go to Victoria for months she completely ignored me. I honestly got the impression my opion doesn't matter. This isn't just about Hannah this is about Hailey and I to. I brought up to her that you need a months notice for my baby sitter or I'm paying for a sitter for a month that I don't use. She completely ignored it. I asked her if before she makes us go to victoria if she would sign my ei forms, Iv trying to hold off until I absolutely have to. She told me that she didn't think there was ei I could get so I wouldn't be surprised if that was her way of saying she isn't going to sign anything for me.
This doesn't really matter but she is also the only doctor since I have been here that won't sign tap forms. They are suppose to be for appointment use only but every other doctor signed them because it really helps family's out. I think she doesn't realize THIS IS OUR EFFING LIFE. The girls are 14 months it's time they are both allowed to be at home in their own home.



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